(1 of 3) This Brain Has A Mouth
w...@bunker.shel.isc-br.com
Thanks to Bill Scarborough for sending this to me.
THIS BRAIN HAS A MOUTH - The National Magazine of People with
Brains - Special Professional Issue - May/June 1991 - $3
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MOUTH
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How to Promote Your Client to Customer
Seventh Issue
Special Professional Issue:
Who Is The System?
Who Are We? What Are They?
Who's in Charge?
Who's the Doctor?
Which is the True Story?
When Do We Ask the Sticky Questions?
How Much Money Can We Get?
Why Care?
Woman Voted Unworthy of Help - ("She was flashily dressed"
Flashback to the archives of social work)
Sex Re-Education
My Life in a One-Way Elevator
The Impossible Step Up - (A working professional learns that she
may never be considered a professional--because she's a survivor)
The Long Step Down - (One professional takes a close look at the
others)
Giving Birth to Empowerment
In the Beginning
Murphy's Laws of Human Services
Once People Know the Truth
Behind Golden Bars
HOUSE RULES
Ed the Hothead reserves the right to edit anything you send
for length and clarity, not meaning. Ed's our editor, not our
censor.
Unless you prefer to use your real name, he will assign you
an asinine pen name and put an asterisk after it.
Nobody around here gets paid for their work, and you won't
either.
You want a copy of Mouth?
Copy it. Get the word out.
This Brain Has A Mouth, Inc.
61 Brighton Street
Rochester, NY 14607
Mouth off to The Thorn at 607/756-5160 9am-7pm EST. To call Ed
about subscriptions and conferences: 716/473-6764.
ON THE INSIDE: The former director of a brain injury
rehabilitation facility exposes the inner workings of big-time
corporate rehab. Don't miss this revealing report [in this
issue].
DEPARTMENTS:
Mouth Off
Forever Gabby
THANK YOU NOTES GO OUT TO:
Monroe County Volunteer Tapists and Lucy Dechaine, for
putting Mouth on tape
George Washington, for trying
C.B., Steve Goldstein and Richard Berman, for getting the
goods on the bad guys
Martin Luther King, Jr., and Wayne John LaMarre, for the
inspiration
Thomas Neuville, All Thirty, and Ralph
COMING IN JULY:
The Question of Identity - plus - poor folks' blues - plus - how
to explain your weird disability - plus - Ed unmasked
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WHO IS THE SYSTEM?
"I'd like to see my clients
have more control over their
lives, but The System keeps
all of us in line."
"We try to truly listen to
our clients, but The System
won't let us spend the time."
"We came into this
profession to do good for
people, but we have to deal
with The System."
Who owns it?
Is it Government, requiring a form for every move you make?
Is it Lawyers, waiting in the wings to sue you for giving people
the freedom to fail?
Is it Policy, the rules of the organization where you work?
Is it Funding Sources, requiring that you do things their way?
Is it Insurance, the way it won't pay for This and will pay for
That?
The System is all of that plus one more important thing:
The System is the way things have always been done. The System
is our own perfectly normal human resistance to change. "We
tried that once and it didn't work." The System is us.
How can we change it?
We can make a small start by asking ourselves three sensible
questions, heart to heart:
1. What is it,
what is it specifically,
that keeps me from
doing what I know is right?
2. Who will suffer if I do it?
3. Who will suffer if I don't?
Once we answer our questions, we can decide to do that right
thing, or decide not to.
Then do it, or not.
It sounds simple.
Maybe it is.
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WHO ARE WE? WHAT ARE THEY?
We like things. They fixate on objects.
We try to make friends. They display attention-seeking
behaviors.
We love people. They develop dependencies.
We take a break. They go off task.
We have hobbies. They self-stim.
We persevere. They perseverate.
We insist. They tantrum.
We have talents. They have splinter skills.
We stand up for ourselves. They are noncompliant.
We change our minds. They are disoriented and have short
attention spans.
We are customers. They are clients.
by Mayer Shevin
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WHO'S IN CHARGE?
by Member of the Board *
Taking the reins of control from the hands of control from
the hands of providers of health care and placing them in the
hands of the recipient of that care is an idea not limited to
people with head injuries.
It is a vigorous, growing, controversial movement in other
areas of health care as well.
Dr. Bernard Siegel is one of the major champions from the
medical community who urges the customer to take charge. His
Love, Medicine, and Miracles would qualify as a textbook on the
subject if it weren't such a joy to read. It is an inspiring
book dealing with the positive benefits of taking charge.
Sound of a Miracle by Annabelle Stehli, a mother, tells the
story of her daughter who was condemned by her providers to the
permanent isolation of autism.
Her mother took charge of Georgie's treatment. Not long
ago, Georgie graduated from college magna cum laude and received
the Charles Salzburg Award in recognition of her outstanding
achievement.
I applaud Georgie and her mother from bitter experience. We
failed to take charge of our son's treatment when he was
discharged from hospital care for a head injury.
We know now, nineteen years later, that we were the ones
most capable of taking charge. Upon reflection, we come up with
numerous reasons why we failed to do so.
But with 20/20 hindsight we see that these reasons are only
excuses.
We will never know the effects of our failure to take charge
of our son's treatment. There is no doubt, however, that our
failure proved a boon to the money-grubbing providers. Our son
was well insured.
A notable example: a well-disguised scam in South Florida,
most of whose customers are well-heeled or well-insured
schizophrenics, got our name.
Their medical doctor diagnosed our son as a schizophrenic
during a telephone conversation with me. I described my son's
head injury, coma and acute treatment, hospitalizations, and
available insurance in some detail.
My son was then welcomed with open arms as a full-time
client and warehoused as a schizophrenic. I failed to take
charge.
So when we talk about forced rehab, aren't we really talking
about who's in charge?
I believe that help is on the way. Medicine and
rehabilitation are being reoriented--often against their will--in
the direction of treating patients as the valuable customers they
are.
In the meantime, you may bruise lots of toes and egos, but
you can take charge of your own treatment now.
When you ask yourself if taking charge is the right thing,
ask yourself one more question: who's in charge of your life--
you or the provider?
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WHO'S THE DOCTOR?
by Dr. Who *
She was a hotshot, a woman who had grown her own company all
the way to the success she deserved. A good woman. And things
were working out--typical, well-planned, straight line,
shipshape. It's the bliss that we all live in.
She's driving along and here comes a basic law of physics:
two objects can't occupy the same space at the same time. BOP!
She goes to the hospital, then to inpatient rehab, then
outpatient. Goes back to work almost immediately, part of her
outpatient program. But things aren't quite typical. Things
aren't quite . . . working out.
Nine months post, she comes to me for a neuropsych
evaluation. We get to know each other and start working
together.
She says that her personality's changed. Her husband says
so too. He'd stay with her no matter what, but he's kind of used
to the assertive wife he had before. Now the former Ms. Hotshot
is content to let things slide.
She's perplexed by this. And this laid-back thing is
hurting her business.
We're talking one day, Ms. Hotshot and her husband and me,
and she says maybe she'll start taking the kids to Little League
again. Do I think that's OK?
I ask her, what would you like to do?
You're the doctor, she says.
I'm the doctor? So should I whip out the prescription pad
and Rx Little League? I wonder: would she want to know the
contraindications and side effects?
No, I'm not going to play that role. This is her life. She
and her husband make the decisions. I'm not going to make them.
But you're the doctor!
Wait, I tell her, we're partners here. I have a certain
fund of information. You have a fund of information. We can
merge this information to help you solve your problems.
But you're the doctor!
Ms. Hotshot is used to the medical world, where the doctor
knows best. She was never a partner in her health care.
Doctors, they're powerful. Doctors know everything. Doctors
make you well.
The doctor who plays that game will wind up playing the
fool. The fantasy will be shred.
But you're the doctor!
You hear what she's saying? Fix me! She wants the magic
bullet, the purple pill. It worked with smallpox, it worked with
syphilis. Now she wants the cure for head injury. Sorry, no
such cure.
But you're the doctor!
I resent people putting me into that deity role. She wants
me to say, Here, sit in front of this computer once a day and our
special program will bring back your memory and that go-getter
personality. In three months everything will be just the way it
was.
That's what she wants me to say. Because I'm the doctor.
I say, Please don't call me doctor.
She says, Okay, Doctor.
It's the magic credit card society. We work up health
debts, call the doctor, he gets out his scalpel, removes the
health problems, presto! All gone!
This whole idea is wrong, but people cling to it. If
there's nothing that can't be fixed, then I don't have to worry
about icky stuff like dying. Or like getting my own act back
together.
People get hurt, they want the chicken soup. They want
somebody to give them the mumbo jumbo of magic recovery.
That's why so many are suckers for that strong voice, that
firm hand, that big bill.
Please don't call me doctor.
**************************************************************
WHICH IS THE TRUE STORY OF ED?
Story 1:
Ed lives with his mother and sisters. Ten of his relatives
live nearby and they get together often.
Ed is well known in his neighborhood. He gets out to the
stores and to neighbors' houses every day. He also goes to
church on Sunday.
Ed is a big guy who dresses nicely and likes meeting people.
He doesn't always communicate real well. When he gets frustrated
he cusses and talks to himself out loud.
Once, at work, he broke some furniture and punched holes in
the wall. He got fired for that.
Ed loves music, dancing, and cooking. He enjoys fixing
meals for himself and for others at once. He likes machines, and
any kind of work where he can use his strength, like stacking
wood and moving furniture.
Story 2:
Mr. Edwin Davis has a mental age of 3 years, two months. IQ
= 18.
Displays severe impairment of adaptive behavior. Becomes
agitated and out of control.
His verbal ability is severely limited; he's unable to
comprehend abstract concepts.
Mr. Davis learns through imitation.
He has learned to unlock the Coke machine and restock it,
and to crank and operate a power mower.
His family is uncooperative. They break appointments and do
not follow through on behavior management plans.
Professionals told Story #2, in compliance with state
regulations, so they could direct the routine work of service
staff.
Their story justifies Ed's eligibility for the program, and
the program's responses to Ed's behavior.
Story #2 takes existing service arrangements as given.
People who know Ed and his family told Story #1 in order to
reveal capacities in Ed, his family, his neighborhood.
Their story justifies action to expand his opportunities and
learn better ways to support him in doing what he likes to do.
Story #1 assumes that existing arrangements can bend to make
the most of Ed's capacities.
Which Story Came First?
The professionals who told Story #2 selected objectives for
Ed: increase his time on task at the assembly contract the
center works on; increase his accuracy in performing letter
folding to improve his motor coordination of small movements, and
teach him to prepare meals by identifying menu items from
pictures of the four basic food groups.
Frustrated, he punched holes in the wall there. The
professionals recommended Ed be admitted to a psychiatric
hospital for evaluation and treatment.
Reading their own notes about Ed's need for speech therapy
and his family's difficulty in following through on required
programs, the professionals recommended that Ed then be placed in
an institution for intensive training.
The second story came first.
The Happy Ending
The tellers of Story #1 discovered Ed's preferences and
neighborhood resources to deal with his idleness after he was
"fired" from the program and threatened with
institutionalization.
Within three days, one of his sisters and one of the writers
of Story #1 found an opportunity for Ed to load soft drink
machines at three stores in his neighborhood.
Within two weeks, another sister, a neighbor, and the writer
had begun to create a work schedule for Ed: lawn mowing, wood
stacking, and yard work that Ed and one of his cousins could
share. They recognized his ability to help out at home, and
encouraged his mother to up her expectations of regular and
reliable performance.
The tellers of Story #1 didn't aim for perfection, nor have
they achieved it. Three years after they told their first story,
Ed still loads machines and works outside every day, but he
doesn't have a full time job, and he gets very little cash for
his efforts.
He remains active and helpful around his house and among his
neighbors.
He has had no help improving his ability to communicate,
though there have been several unproductive referrals.
Ed continues to talk to himself, but hasn't had a big scary
wall-punching episode in more than a year.
Moral of the Stories
When you are asked to write somebody's story, do your
initial measurements by the Golden Rule. Write about others as
you would have them write about you.
(This story was originally told by John O'Brien and Beth Mount.)
***************************************************************
WHEN DO WE ASK STICKY QUESTIONS?
by Sarah Raskin, PhD
As a neuropsychologist, I have questions about ethical
issues involved in providing cognitive rehabilitation.
I don't have the answers. But it is time for us to look for
answers together.
1. Who do we treat?
Although it is easy to assume that more is always better, in
fact not everyone may benefit from the treatment we have to
offer. If so, it is unethical to continue to place both
financial and emotional burdens on the person. Be honest with
the person. Let him or her decide.
2. Who do we refuse to treat?
In general, it's anyone who can't play--people who are
uninsured or underinsured (quite a large number of working
people, especially when their resources were used up in acute
care), not to mention folks who are undocumented, have no
permanent address, or have only Medicaid.
Worst is the practice of treating people until their
money/insurance runs out and then discharging them.
The principles of the American Psychological Association
clearly state that we must be willing to treat on a pro bono
basis.
3. What goals do we set?
Early short-term goals are typically improvement on specific
tasks, such as a particular computer program or
neuropsychological test. However, it's important that long-term
goals reflect functions more meaningful to the individual. Long-
term goals usually involve some form of employment. While
employment is important, it is not necessarily the best treatment
goal.
For one thing, does it mean return to a former job, a former
level of employment, or return to any kind of work at all (like
frying burgers or stuffing envelopes).
Not everyone cares about employment. I have met many people
who tell me it's much more important to reach a level of social
functioning--to take part in family activities, for instance--
than to return to work.
4. What if the goals and expectations of the family
conflict with those of the person with the brain injury?
On the one hand, the family may react by denying the
seriousness of the situation. This may lead to problems if the
individual doesn't live up to expectations.
On the other hand, the family may become over-protective,
and try to keep the person from doing what he or she considers
important.
We must then support the individual's task of redefining or
reasserting her or his own identity.
We are their advocates.
5. Who decides when treatment is complete?
Once we've worked out the goals together, we can work out--
together--the best way and time to end treatment. This is easy
if you've set goals that are now at hand.
However, even then there should be a way that someone who is
discharged can appeal the decision if they want treatment to
continue.
6. Who makes the treatment decisions?
This is, I think, the toughest question. Reduced insight is
common immediately after a brain injury. Professionals
subsequently tend to reject the notion of the person with the
injury as completely autonomous and able to make treatment
decisions.
If the person wants to, I try to devise clear-cut short-term
goals that include exercises to increase insight. As insight
increases on these tasks, the person begins to make all decisions
and set all goals herself/himself.
However, even if the person's insight is poor and s/he sets
goals that I think are too high, s/he must be given the option of
finding another therapist who may agree with those goals. In any
case, any goals must be agreeable to both parties.
7. Do we have to use force?
In the process of providing information and setting goals, I
believe nothing should be forced on a person so that they agree
verbatim or before they are ready. Sometimes defenses (read
"denial") exist because they're needed when the pain and the
trauma are too great.
8. My final question may be the most controversial. Is our
profession too heavily influenced by money?
We all know that rehabilitation facilities have become
viable sources of profit.
Although this profit has increased the number of programs
available for people with brain injuries, the focus in many of
these programs is profit before quality of care.
This results, for instance, in the selection of well-insured
people exclusively, opens the door for more expensive
technologically-dependent techniques, and creates longer
treatment durations over other possibilities.
I suggest that anyone who works in institutions where profit
comes before care is implicitly condoning these practices.
These are only a few of the ethical issues that I have seen
fellow professionals deal with in blatantly unethical ways.
The bottom line for me is always giving choice and control
to the person with the injury.
After all, the point of treatment is to enable people to be
as independent and autonomous as possible. We cannot achieve
this by telling them exactly how to do anything, or forcing them
to do things our way.
****************************************************************
HOW MUCH MONEY CAN WE GET OUT OF THIS CLIENT?
[Beginning of italicized note:] A report arrived here,
anonymously. We don't usually publish anything unless we know
who wrote it.
So we found out who wrote it: the former director of a
brain injury rehab facility.
Ed XXXed the names so Mouth won't find itself in court.
(Rehab at the hands of the XXX vultures was bad enough. Court
could only be worse.)
From our own investigations of this company, we can assure
readers that XXX hasn't changed its policies since the report's
author resigned.
In fact, the situation at XXX has deteriorated.
Corruption at the top does tend to trickle down, in this
case infecting the entire organization. Not even the attendants
are exempt these days. [End of italicized note.]
This report will focus on problems that occur when brain
injury rehabilitation becomes so business-oriented that the
patient loses out. In particular, one major vendor of brain
injury rehabilitation, XXX, is a significant abuser of patients'
financial resources.
Most rehabilitation centers around the nation charge prices
for services which are competitive or similar to other
rehabilitation centers in the same marketshare area. Prices
usually vary depending on the amount and intensity of services
provided.
The fewer services provided and the less supervision and
assistance needed by the patient, the lower should be the cost to
the patient and funding source.
There is every reason to believe that most rehab programs
charge a patient for services and items which they actually
receive and which they actually need.
"At least one provider of rehab purposely charges patients to the
extent possible, regardless of what will actually benefit the
person."
A large number of rehabilitation professionals and insurance
company claims supervisors nationwide are aware that XXX
frequently gouges patients and funding sources.
Numerous present and past management level employees of XXX
could verify this. Many people have joined an informal "ex-
employees support group." We all have similar stories, stories
of unethical policies that our corporate headquarters expected us
to practice.
We could tell you of the pressure exerted by the corporate
level staff when we did not agree with corporate financial
gouging policies.
Corporate staff would reprimand facility managers, and limit
what we were allowed to do at our own facilities. For instance,
corporate people would assign the "second in command" to carry
out policies which the "first in command" refused to do.
Corporate staff would spread false information about the
manager who wouldn't gouge, and would even do things designed to
force out the manager or director who didn't enforce corporate
policies.
Lower-level staff might also verify XXX's unethical
financial practices as well. Here are some examples:
1. XXX has been known to keep a patient in rehab solely on the
basis that the patient still has insurance funds to use, although
the rehab team has recommended that it is time for discharge.
2. Corporate officers mandated, starting in 1988, that clients
were not to go home for holidays or on weekend passes unless they
or their insurance company paid a "bed hold."
"Clients were told that it was therapeutic for them to stay at
the center for holidays."
Corporate memos said that the loss of revenues from holiday
passes was significant, and that staff should "think of every way
possible to keep them in the facility and deny passes. Please be
sure you have sufficient staff on weekends and holidays so that
charges can be generated on these clients."
After every holiday a corporate exec would send messages
about whether or not facilities had done their job of keeping
revenue up during the holiday. Case managers and facility
directors would often get individual reprimands for letting
clients go on pass.
According to corporate policy, only "fee-for-service"
clients were to receive weekend and holiday therapy. "Per diem"
clients were not, because XXX was paid a set amount for each day
no matter what services they received.
Clients who want to go out on pass are often told that "it
isn't therapeutic" when in actuality management needed for them
to stay in order to make money. Families who strongly insisted
usually got their way, after facility staff hassled them about
paying a "bed hold."
At least in 1988, XXX created a new position of "weekend
coordinator" to insure that enough activities were planned that
clients would not want to go out on pass, and to have enough
billable services to meet the corporate daily target for
revenues.
3. Clients who are being charged on a per diem basis often do
not get as much therapy as their families or insurance companies
think they're getting.
XXX gets paid the per diem no matter how much or little
therapy the client gets. The per diem rate would be more
applicable to someone receiving 4-6 hours of therapy 7 days a
week. A per diem patient receives two hours of therapy.
This particularly happens with long term patients, ones who
are in the facility a long time and no longer really benefit from
intensive therapy.
The fee-for-service clients do not bring revenue into an XXX
program unless they receive specific services covered by their
insurance policies. Some such clients receive "extra" therapy in
order to meet a certain revenue target set by XXX.
Some patients or clients certainly do benefit from
additional therapy. However, many do not.
5. Corporate XXX sets daily revenue targets for each
patient or client. During one year, revenue targets went from
$400 to $525 to $600 per day.
Each weekday, the charges from the day before are sent to a
corporate billing office. The managers or directors then are
required to explain why a client did not meet the target.
Per diem clients did not have to meet a target because the
company gets a set amount of money each day for them no matter
what.
6. XXX recommended sending therapists to the bedsides of
fee-for-service clients who were ill. If the clients didn't get
therapy, XXX didn't meet its revenue targets.
XXX also recommended sending therapists with fee-for-service
clients when the clients had to leave the facility for doctors'
appointments. That way, therapy could be administered on the way
there and back, and XXX wouldn't lose any money.
XXX has cut back the number of staff members who are in
"non-revenue-producing positions."